Parkinsons disease, base survival tactics. - Cure Parkinson's

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Parkinsons disease, base survival tactics.

beehive23 profile image

Its 2022, you are disabled or well on your way to PD disability land, no matter how much Thiamine, Mucuna, Ashwagahnda, black pepper, NAC , B1, amino acids, vit c, boxing, LSVT, blueberries, cinnamon, bicycles, self help forums, honey, Dbs procedures, Focused Ultrasound in Sweden you partake in.......time to get real..im all for pd alchemy, but it dont work. Soooooooo my practical suggestion is this....1. save your money..2. ........accumulate enough of each of your medications to stash the american PDR recommendations per titrating off the med safely. Order your meds as early as you can, do whatever it takes to have in reserve enough medication to be able to quit. Ignore this, eat your prime rib who cares..... or prepare...youll be lucky to find a Dr who gives 2 craps about your PD. Youll be lucky to get meds at the least afford them......so for all of us who cant open syrup bottles, milk containers, wipe our rears, cook a meal, walk a straight line, get lost in the grocery store, lose our licenses, fight pain, anxiety, cant breathe called liars by our dr's made fun of by a previous insane president.. and desend into simemt exacorbated Dimentia..cancer, ignorance and discrimination.........its gonna get WORSE. Stash your backup meds. I watched my uncle, and grandfather and now me die from PD. 3 generations.....im 53 pd since 33...at least..........Mister movie star is spouting his BS about "you dont die from PD but with it?" im down to 41% lung from rigid chest muscles..>86% of us will die with respiratory PD related Failure.......in aarp the one organization that has policy-wise fought tooth and nail to avoid putting the terminal illness called parkinsons off the $/research list. tell that to my family as we suffocate to death From PD, 3 generations........and my friends ......who are dead from PD. Happy New year and hang tough............reality bites....

41 Replies

Happy new year! The way I try to deal with it is by thinking that none of us were promised a certain life span, health, or how we would join back to our make. I had almost 50 years before PD. Millions did not even live that long... I have plenty to be grateful for.

What is sad is seeing multiple vaccines for COVID in record time, and trillions for unnecessary wars and wasteful spending, but somehow not enough funding to research various diseases. Politicians have a lot to answer for.

I wish us all a better year.

“You’re hired.”

Sorry you are personally having such a hard time. That does not justify you pronouncing what amounts to a curse on everybody else. Such results do not occur for everybody:

Parkinson's disease outcomes compiled by Laurie Mischley
kevowpd profile image
kevowpd in reply to park_bear

There are no controls over the inputs to this model. It's a survey. There is no way of knowing whether people are doing what they say they are doing nor whether they are enjoying the benefits they say they are enjoying. There's literally no objective measurement involved whatsoever. We can't even establish that the participants have PD (and weren't mis-dx). We talk about how poor open label studies are, but this isn't even that good.

Nonetheless, the relative lack of responses after 20years is consistent with is already documented and that's that you are probably dead by then, or too unwell to complete the survey.

Carpe diem and all that.

park_bear profile image
park_bear in reply to kevowpd

Yes this is a patient survey. No one ever claimed otherwise. This is not the first time you have taken refuge in assuming that respondents are lying or at best misperceiving their condition. Your dedication to the proposition that everyone will achieve a bad outcome is duly noted. Is a pity that your personal situation is apparently such that that you feel obliged to justify it by claiming anybody with a better outcome must be deluded.

kevowpd profile image
kevowpd in reply to park_bear

And your dedication to a polyanna PD experience is likely far more broadly understood than mine. Yet you felt the need to share it (yet again) in an unnecessarily ctitical tone.

Its understood that you know everything, but others may not be aware of the background to the MVP/cam care study, and this chart has been presented on this forum numerous times to make numerous points. Mostly, the person posting it says very little or nothing about the background to it, and you didn't do so here, either. And given how comfortable you are pointing out poor study design or low quality information when it suits you to do so (see: every toxin induced mouse model trial ever), I'd say an endorsement can be somewhat inferred when you don't. So I mentioned the background. So people would know.

As for misperception, the idea that people with a condition generally accepted to be debilitating, neurodegenerative and in a majority of cases eventually severely impacting on cognition (unless they die of aspiration pneumonia first, of course) should have some difficulty perceiving their condition or reporting it is completely non-controversial. It's why most studies don't rely on self reporting via a web form to capture the impacts of an intervention.

Yes, there are outliers in PD. Maybe the thiamine and qi qong will allow you to be one. But generally I'd say the opening poster's perspective is fairly accurate.

"After 20 years follow-up of newly diagnosed patients with Parkinson's disease (PD), 100 of 136 (74%) have died. The mortality rate fell in the first 3 years of treatment, then rose compared to the general population, the standardized mortality ratio from 15 to 20 years reaching 3.1. Drug induced dyskinesia and end of dose failure were experienced by most patients, but the main current problems relate to the non-levodopa responsive features of the disease. Dementia is present in 83% of 20-year survivors. Dementia correlates with increasing age and probably reflects an interplay of multiple pathologies."

OP has had most of his adult life stripped away by PD. Sure, he's not the most artful communicator but at 20 years in, maybe you could cut him some slack.

(And this is where you respond further to say you won't respond further).

park_bear profile image
park_bear in reply to kevowpd

You misrepresent my position:

" pointing out poor study design or low quality information when it suits you to do so (see: every toxin induced mouse model trial ever)"

Wrong. I specifically object to mouse studies that test whether premedication with a candidate substance protects against toxic insult. This is not representative of the Parkinson's situation. It is possible to do excellent mouse studies by checking whether a candidate substance improves existing Parkinson's. Such was the case with the cinnamon study that I reported on.

I have no doubt that the study you reported does describe the typical result for Parkinson's patients that do not embark upon nonmedical interventions. That was exactly the direction I had been headed in. Four years ago I was up to 600 milligrams of levodopa medication daily. Now I need less than half of that. You can call it Pollyanna if you like. I call that an actual result. If you want to spend your energy justifying avoiding such interventions that is your business and you are welcome to it. I choose otherwise.

kevowpd profile image
kevowpd in reply to park_bear

My point was that you are open to criticising study designs. That is a fact.

The sad reality is that there are scores of people that have tried every non-medical intervention under the sun and still seen their PD or their spouse's PD progress at about the expected rate, and into dementia or death.

But hey, maybe you've cracked it.

And you can spend your own energy criticising people for sharing their perspectives, but you don't actually have to. I prefer to listen to all perspectives and I'm conscious that 20years of PD may impact someone's ability to communicate to the usual standard.

park_bear profile image
park_bear in reply to kevowpd

Of course I am open to critiques of trial designs. You state "that is a fact" as if that is in dispute, which it is not.

I agree with the importance of being factual. You state: "scores of people that have tried every non-medical intervention under the sun and still seen their PD or their spouse's PD progress at about the expected rate, and into dementia or death" [emphases added]. "Scores" would be at least 40. NAME THEM.

Next on the matter of being factual, "sharing perspective " does not properly characterize the insistence that everyone else is going to share the same miserable fate as oneself. This is not a matter of compromised "ability to communicate". The communication was made quite clearly.

kevowpd profile image
kevowpd in reply to park_bear

If you agree with the importance of being factual, when will you be providing the evidence upon which you are relying to make this statement:

"I have no doubt that the study you reported does describe the typical result for Parkinson's patients that do not embark upon nonmedical interventions. "

You say "no doubt". I.e you are certain. You have gotten comfortable to the point of "no doubt" that the people tracked in the long term study did not "embark upon nonmedical interventions".

Want me to present evidence to support my statements? Perhaps you could do the same.

park_bear profile image
park_bear in reply to kevowpd

A comment I made about my own personal belief bears no comparison to you making up data that suits your narrative and attempting to pass it off as fact.

kevowpd profile image
kevowpd in reply to park_bear

So you've absolutely no idea about the extent to which the people studied embarked upon "nonmedical interventions." It just suits your existing biases to assume that they didn't, and then express such an assumption as free of any doubt. Got it.

beehive23 profile image
beehive23 in reply to park_bear

quis enim sine mortis limine desperatus est?...hang tough..

Thank you for the honest insightful post beehive23. I have not been diagnosed with PD. I have REM Sleep Behavior Disorder. My doctor says it is pre-PD. I do have a sore left shoulder and sore left leg.

I'm going to keep trying to sort this out. It gives me a purpose.

I'm so sorry you are going through this.

Who needs to read this crap...??

I think posts like this should come with a warning!Let us believe we’ll be ok - nothing to be gained from expecting the worst.

STEWBABY profile image
STEWBABY in reply to Astra7

DAMN RIGHT. FIGHT TO THE END AND BELIEVE. WHERE THERE IS LIFE THERE IS HOPE!!

It's a tough universe based on brute force. The bodies are subject to it and get sick. Life sees the beauty of a sunset where technically there is only deadly radiation and dust. Why live? Life is capable of creating, of loving, of understanding and what it wants is to find someone to share these things with. This is why we are here, to find someone similar to us to communicate and become friends. Without your ability to live and know your post would never have been written or read or understood. This is what Life does: it reaches, creates, experiences, knows, withdraws, communicates with others and shares. They are great things but the Others are a fundamental part of the game. It is a hard world, the forms perish. We are our immortal souls and in this place or another we will survive and that too is real. Love could be the secret of the Universe.

Beehive,Thanks for sharing your great experience.

A warm greeting from Italy.

Gio

Como Lake Italy today
blogger_7 profile image
blogger_7 in reply to GioCas

@giocas beautudul sentiment. Amen

ddmagee1 profile image
ddmagee1 in reply to GioCas

Gio - such a beautiful, sentimental, yet, realistic view! Thank-you for sharing! It’s a difficult journey, for many, when saddled with a chronic degenerative disease, such as PD!

ParlePark profile image
ParlePark in reply to GioCas

Not only beautifully said but optimistic and true!

😥 I hope this year we can all find something to help get us and our loved ones through another year of this dreadful disease

Bydureon (a.k.a., Exenatide), a repurposed Type 2 Diabetes drug is now in third-stage trials in UK for stopping Parkinson’s in its tracks — results expected 2023. Testing — mice, open label, double blind — has been going on since 2010 and it has been positive every time.

scienceofparkinsons.com/201...

According to a very sensitive test, Homeostasis Model Assessment for Insulin Resistance (HOMA-IR), 2/3 of Parkinson’s patients are supposed to be insulin resistant. IR may be treated with Bydureon (Exanatide). Just an angle that might get us one step closer to getting Bydureon.

cureparkinsons.org.uk/news/...

South Korean researchers have learned how to dial our cells back to stem cell stage -- and are now administering monkey stem cells to parts of their brains that are short on dopamine producing cells -- with the hope they will fill in and take over the job.

Started this before with stem cells from other monkeys and had some success I think until local immune systems attacked foreign cells.

So there is even realistic hope for a cure.

Stoxy profile image
Stoxy in reply to Patrickk

My husband is on this exanatide trial. I’m hoping he’s not getting the placebo! Only 4 weeks in so far but I’ll share anything I learn on here x

Maybe this will cheer you up.

Every day after our birth we are one day closer to death.

WINNER OF THE GLOOM AND DOOM AWARD FOR LIFE!

Regardless of your negative message I'll still stay positive and do my best to fight this disease. Happy New Year and I wish you the best!

What beehive 23 is true, we know how this ends. It ends the same way even for those who are not suffering from PD. It’s the suffering that’s a challenge but life is suffering.

But your PD is not the same as my PD or any one else’s PD.

There is a lot of information on this site as well as other sites, but I don’t think they are organized or categorized.

Your PD appears to be hereditary.

The actor was diagnosed in his 30s.

There are those who suffer from stiffness. While others just have the shakes. And there are those who suffer from every symptom possible.

If the site and the research would compartmentalize PD sufferers into groups, maybe we can identify some of the causes and remedies.

This site provides information, read at your own risk

Hey ,You may have gone through and are going through terrible things right now.. I get it- Well, we all have our own challenges to deal with right? But come on Dude- spewing out regular negativity- not just to yourself but to everyone else here doesn't solve anything.. except drag people down- Something NONE of us need.

I mean get a grip buddy... I'm all for being realistic and not living in the world with rose coloured glasses, but I believe we need to keep fighting, never give up, and do whatever we can to stay well .. Maybe u need to find a new Neurologist? Surround yourself with more positive people? Pray?... I don't know.. but TRY and be a little more positive...

When you post on here you DO have a choice whether to be Negative or Positive- If u just can't be positive, then why not shoot for somewhere in between?

I really hope you find the right combination to feel well again. We ALL deserve it.

Beehive23 - It took courage, I’m sure, for you to share your deep sentiment, concerning PD related issues, that you have experienced! I am so sorry that you have had to go through so much physical discomfort, and emotional pain, dealing with PD, and it’s myriad manifestations! I certainly can relate to some of the truly frustrating times, you’ve had, from dealing with seeming uncaring, medical pros, to feeling that the true nature, for many, with PD is being glossed over, by others! If I hear one more person, tell me that having PD is better than having other neurological diseases, and imply that I may be exaggerating symptoms, that they are no big deal, I think I will scream ‘enough’! An example, some days I have a lot of stiffness, cramping, and pain with muscles, in different areas, of my body. Some days, even with Sinemet, it’s difficult for me to walk, get into a car, or get up from a chair, and start walking forward. I couldn’t walk a straight line, if my life depended on it. Then, there are days, here and there, where, maybe because of Sinemet, I walk better, and can, in general, move better, albeit being slow. So, consequently, I have been ‘ignored’, ‘called a liar’, etc. by different people. What really hurts, is when my neurologist doesn’t seem to want to hear my concerns, and thinks I’m either exaggerating, or making a big deal over nothing. Before I got PD, it was not my nature to complain about things/health problems, mobility problems etc., so, when a medical pro, like that, dismisses my discussing symptoms and problems, and implies that I could have much worse ailments, such as ALS, or Alzheimer’s, that is a turn-off for me. Stating that no one ever dies directly from having PD, and that it is but just a mild ailment, and it won’t affect one’s lifespan, or quality of life, is not true, for everyone diagnosed with PD, and is a dismissive tactic, used by some, to dismiss having to help a patient deal with all the ups and downs, of having PD., in my opinion. The bottom line, is that PD is degenerative, and can severely disrupt one’s life, who has it, and patients should be treated with more caring, compassion, etc. by health care pros, whose jobs are to be supportive of patients! Living with PD has been like living with a two/edged sword, seemingly, for me! Since the COVID-19 Pandemic, most medical attention, and concerns, about PD, seem to have been put on the back burner, so to speak, by families, friends, and some medical pros, has been my experience, so I just carry on and take care of myself, and my wife, the best way I can, and I try to avoid those people, who are not helpful, with their criticism, and attitudes! One has to be tough skinned at times, living with such a complex ailment, as is PD. Wishing you a better New Year, and, remember, there are those of us who care about our fellow PD ‘buddies’, in this forum! You will always get some understanding and support, from others, who have PD, with HealthUnlocked.com!

Keep your pessimistic thoughts to yourself. Each PWP is different, what you experience doesn't mean your fellow PwP will experience.

Are you feeling better with your post? What was its purpose, to make other people feel the way you do?

Thank you for your post. Abdominal tightness now making it hard to breathe at this time. Whole body barely responding to Sinemet and Lyrica. Meds have to get out of the stomach and get to the small intestine. With rigid gut muscles, RX orally is useless. I am now using THC (Vape) to help cope with my condition. Abdomen is so tight you could bounce a bowling ball off of it. You are so right about doctors, they don't give a s--t. My off state to off state in the PM i s every three hours. Shake is out of control for L-Hand and mouth. I was taking 1/2 of a 25 -250 Sinemet every three hours. I now take a full dose when I go to bed and when I wake up in the AM between 4 and 7. Still trying to get a prescription for Madopar which from my research, does not have as many gut problems as Sinemet. The Canadian pharmacies have it available, but need a prescription. I don't wish this disease on my worst enemy. Titrating off of the RX would leave me totally paralyzed. I am also building up a supply of current scripts.

Where there is life, there is hope...

youtu.be/bMVC5IcNxIM

Despe profile image
Despe in reply to House2

Unbelievable! W O W!

DUM SPIRO SPERO!

House2 profile image
House2 in reply to Despe

youtu.be/j_agkFQHtHM

beehive23 profile image
beehive23 in reply to Despe

Spirans ...... ad hoc momentum, 3 horas expecta et mutabitur. Interestingly ut sit pars fori adiutorii qui te odit cum verum dicis. Sed tunc ... thats Americae nunc. iubentium. hang tough.

This is one of the better strings. Sometimes I do not see the things that others do and I wonder why they are upset. Every person who jumped on Beehive did so because he stated his truth and people are only interested in their own truths, happy, happy , joy, joy said the cartoon character. Every thing will be fine, a cure is just over the horizon , we will eat magic mushrooms. There is nothing wrong with that attitude if that is what you want, but why restrict and condemn what behive says. If you do not like it, if it bothers you, stop reading and click on something else .

The problem is that what behive says is absolutely the truth. He did not say it would happen to everyone,especially not you. One respondent asked him if he felt better writing this, I hope he did and that he writes again if it did something for him. People said it was bringing them down, awwwww , I wish you were here.

Step back people, this one is not about you. Its about behive, and he is playing the end game

at a very young age. A bit of respect for a person going through more difficulty than you understand. A member of this community at its worst nightmare. Reality sucks but you cant just cover it up with tinsel. If it scares you, take some herbs, and it will never happen to you.

WinnieThePoo profile image
WinnieThePoo in reply to GymBag

20 years ago I bought a book by a popular hypnotist called Paul McKenna

"Change your life in 7 days" - and I did

One quote from that book resonates particularly

"Whether you think you can, or whether you think you can't, you're probably right"

And since I have been diagnosed with PD I have found that expression of the benefits of positivity especially relevant.

beehive23 profile image
beehive23 in reply to GymBag

Thank you! Sincerely,, its been a long 20 yrs. Hang tough.

I agree completely. Look at the responses again. If they dont have something nice that they can say to him why rip him for saying what is happening to him. Actually Paul McKenna might be of a lot of help to Behive. His self help books and vidios might be helpful but actual hypnosis has been said to be of benifet.

mindvalley.com/bliss/master...

Life’s a bitch, then you die of complications of Parkinson’s disease.🙂

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